Aligning Incentives for Patient Engagement: Enabling Widespread Implementation of Shared Decision Making May 23, 2013 Karen Sepucha, Massachusetts General Hospital Dale Collins Vidal, The Dartmouth Institute for Health Policy & Clinical Practice

1. D e c i s i o n Q u a l i t y M e a s u r e m e n t
Aligning Incentives for Patient
Engagement
May 23, 2013

2. Measuring and Improving
Decision Quality
Karen Sepucha, PhD
Health Decision Science Center
Massachusetts General Hospital
ksepucha@partners.org
http://www.massgeneral.org/decisionsciences/

3. Measuring Decision Quality in
Clinical Practice
Dale Collins Vidal, MD
Section Chief, Plastic Surgery, DHMC
Professor of Surgery, Dartmouth Medical School
Director of the Center for Informed Choice, TDI

4. 36 years old female
Presented with sore on right breast
Referred for biopsy
Diagnosis:
Invasive Breast Cancer
Meet Amy

5. Typical Journey

6. Amy’s Journey

7. Amy’s Journey

8. • Sometimes, there is no “right” choice
• When there is a single best option,
doctors may not be aware of it
• Or worse, they may know the best
choice, but fail to act on it
Fragmented care of the past…

9. Comprehensive
Breast Program
Surg. Oncology
Med. Oncology
Radiation Onc.
Radiology
Pathology
Plastic Surgery
Familial Cancer
Program
Physical Therapy
Clinical Trials
Palliative Care
…replaced by coordinated care

10. Health Care Delivery
is Complicated

11. Health Care Delivery
Is Complicated
Health Care Decisions are
More Complicated

12. Categories of Care
Effective
Care
Preference
Sensitive
Supply
Sensitive
Health Care

13. Shared Decision Making
Preference
Sensitive
SDM

14. Discussion
• In 1993, an NIH consensus panel
recommended that breast
conservation would be the preferred
treatment for most women with early
breast cancer
• What is the right rate for breast
conserving surgery in the setting of
early stage breast cancer?

15. Discussion
• In situations where there is no single
best option and/or the evidence is
uncertain, how should we inform
patients about their options?

17. Slides courtesy of Nan Cochran
“The risk of a side effect
from this medication is…”
Qualitative
Term
Your Estimate of the
probability
Rare
Unlikely
Probable
Very Likely

18. High Quality Decision require
Adequate Knowledge
Values clarification
Values-Choice
Concordance
Sepucha, Fowler, Mulley.
Policy Support For Patient-
Centered Care: The Need For
Measurable Improvements In
Decision Quality,
Health Affairs 2004

19. Former Intake Process for Patients Newly
Diagnosed with Breast Cancer
Biopsy
reveals
invasive
cancer
Patient
proceeds to
appt. with
surgical
oncologist
Radiologist
informs patient
of diagnosis
Coordinator
schedules appt.
with surgical
oncologist

20. Biopsy
reveals
invasive
cancer
Patient view
DA prior to
appt. with
surgeon
Radiologist
informs patient
of diagnosis
Coordinator
schedules 2
appts: CSDM &
surgery
Current Intake Process for Patients Newly
Diagnosed with Breast Cancer

21. Evidence Based
Decision Aids:
Norms

22. dex*
1/7
es
Leaning toward : Mastectomy
Sure about choice : No
Knowledge :
Understands :
survival rates
recurrence rates

23. Question
Post
Video
Post
Consult
1. Survival Rate 100% 96%
2. Recurrence Rate 84% 93%
3. Recurrence Likelihood 98% 94%
4. Urgency of decision 94% 98%
Total (Average) 94% 95%
Patient Knowledge
N=115
Collins et al. Can Women With Early-Stage
Breast Cancer Make an Informed Decision
for Mastectomy? J Clin Oncol 27:519-525.
© 2008

24. 2.3
2.5
2.2
2.2
4.3
4.2
3.9
4.6
1-A Little
Important
2 3 4 5-Very
Important
Reasons to choose Lumpectomy
Breast is saved
No prosthesis
Recurrence rate
Summary score
Reasons to choose Mastectomy
May take less time
Peace of mind
Recurrence rate
Summary score
2.7
2.9
3.2
2.9
3.8
4.2
4.5
4.2
1-A Little
Important
2 3 4 5-Very
Important
Reasons to choose Lumpectomy
Breast is saved
No prosthesis
Recurrence rate
Summary score
Reasons to choose Mastectomy
May take less time
Peace of mind
Recurrence rate
Summary score
Lumpectomy
Choice
Mastectomy
Choice
Values for Possible Outcomes
Compared to Treatment Choice
65%
35%

25. Logistic regression of value scores as
predictors of surgical treatment choice.
Collins E D et al. JCO 2009;27:519-525

26. 70
75
80
85
90
95
100
1998 1999 2000 2001 2002 2003 2004 2005 2006 2007
PercentBCS
Which rate is right? 70%? Or 95%?
Rates of Breast Conservation
at a major academic medical center

27. Discussion
• Which rate is right?

28. Health Care Decisions
are Complicated
…and decision quality is an important
dimension of care if we want to insure
that patients are getting the care they
need and would choose when fully
informed.

29. Value Proposition for SDM

30. The clinical encounter may be further
complicated by the emotional distress
associated with a recent diagnosis or
underlying disease
The push for increased clinical
efficiency and clinical documentation is
driving shorter and shorter
interactions….
At the same time, we must evaluate and
inform patients about increasingly
complex options – often in situations
where the evidence may lacking or
inadequate.
Clinical Barriers

31. Discussion
• How can shared decision making
optimize the value equation?
Value = Quality/Cost

32. 36 years old female
Presented with sore on right breast
Referred for biopsy
36 year single special educator
Invasive Breast Cancer
Remember Amy?

33. Take Aways
• Why is health care delivery so
complicated?
• What is it about health care decisions
that make them so complicated?
• What does it take to redesign delivery
systems to support high value, patient
centered care?
• How can we embed change into practice?

34. Thank You!

35. • Jack Wennberg
• Jim Kim, Jim Weinstein
• Al Mulley, K. Sepucha
• Hilary Llewellyn-Thomas
• Annette O’Connor
• Allison Hawke, Caroline Moore,
Kate Clay, Stephen Kearing,
• Sue Berg, Ashley Harris,
Sherry Thornburg
• Lisa Weiss, DCS
• FIMDM, Health Dialog
Acknowledgments

36. Agenda
 What is a good decision?
 How to measure “decision quality”?
 Knowledge
 Matching treatment to goals
 How might the survey be used?

37. Case study: Mr. M’s Story
 71yo man referred to orthopedics, worsening
right hip pain over past 2 years, x-rays confirm
damage
 Orthopedic surgeon’s note: “I went over in some
detail different treatment options. He very much
wishes to proceed with right total hip
replacement.”
 Talked with family and friends, saw PCP for pre-
op evaluation
37

38. Mr. M’s Letter
38

39. High quality, patient-centered care
NQFNational Quality Forum
Core Themes:
 fully informed
 treatments reflect
patients’ want, needs
and preferences
 play a key role in
making healthcare
decisions

40. Agenda
 What is a good decision?
 How to measure “decision quality”?
 Knowledge
 Matching treatment to goals
 How might the survey be used?

41. Measuring Decision Quality
To provide evidence that
- The patient understands key
facts.
-The treatment received is
consistent with the patient’s
personal goals.
-The patient was meaningfully
involved in decision making
Sepucha et al. 2004 Health Affairs; Elwyn BMJ 2006

42. “they didn’t say to me, “Well, we could
remove the breast, we could do
this, we could do that.” They just
said, “This is what we’re going to do.”
And that was it—I wasn’t in on the
decision.”
“I made the decision. I’m very happy with
the lumpectomy because that’s what I
wanted to do from the beginning. They
[my doctors] didn’t disagree. They didn’t
agree. They just said, “Okay.” They
understood.”
“She[the doc] was compassionate, …
[and] gave me the data that I needed ...
We talked statistics and sizes and
measurements and things that helped
me..with my decision.”
Who made the decision about
treatment of your breast cancer?
Mainly the doctor
Both equally
Mainly you
X

43. Survey development process
ITEM GENERATION
 Literature review
 Focus groups and
interviews
 Candidate facts and
goals
 Patient and provider
importance ratings
(~n=20)
DRAFT INSTRUMENT
• Draft items
• Cognitive
interviews (~n=5)
• Medical and literacy
review
• Field testing
FINAL INSTRUMENT
• Formal
evaluation, large,
diverse samples
• Benchmarks and
standards for
reporting

44. Field tests for many decisions
 Surgical decisions (n=1,221)
 Breast cancer surgery (n=237, n=445) and Reconstruction (n=84)
 Knee and hip osteoarthritis (n=382; n=127)
 Herniated disc (n=183)
 Cancer screening (n=338)
 Colon cancer screening (n=338)
 Medication decisions (n=1,243)
 Menopause (n=401)
 Depression (n=404)
 Breast cancer systemic therapy (n=358)
 Underserved populations (n=289)
 Colon cancer screening, African American (n=191)
 Breast surgery Spanish language, Hispanic (n=98)

45. Measuring
knowledge
 Key facts
 Mix of gist and
quantitative
 Strong
psychometrics

46. Measuring
goals
 Straightforward
task
 Key
consequences
good and bad
 Challenge of
timing
assessment

47. Do patients get treatments that match their
goals?
Had
Surgery
Had non surgical
treatment
Goals suggest
Surgery
Goals suggest
Non surgical
47Source: Sepucha K et al. Decision quality instrument for treatment of hip and knee osteoarthritis: a psychometric evaluation. BMC
Musculoskelet Disord 2011 Jul 5;12(1):149.
Overuse
Underuse

48. Do patients get treatments that match their
goals? (n=383)
Had
Surgery
Had non surgical
treatment
Goals suggest
Surgery
50% 25%
Goals suggest
Non surgical
12% 14%
48Source: Sepucha K et al. Decision quality instrument for treatment of hip and knee osteoarthritis: a psychometric evaluation. BMC
Musculoskelet Disord 2011 Jul 5;12(1):149.

49. Is there a “Decision Quality” score?
 Informed and receive treatments that match their
goals
 31% of respondents met cutoff for knowledge and had
treatment that matched their goals
 Site (using decision aids), involvement score, and
having had surgery were associated with higher DQ
 Linked to less regret and more confidence

50. Agenda
 What is a good decision?
 How to measure “decision quality”?
 Knowledge
 Matching treatment to goals
 How might the survey be used?

51. What’s the purpose of measurement?
Research
BasicTranslClinical
Accountability
Performance
measured and
compared
Clinical practice
Care is implemented in
various settings
Benchmarks
Cost/Feasible
Risk adjustment
Actionable
Feasible
Acceptable
Detailed
Theory
Controlled

52. Partners ACO: care improvement tactics
52
Longitudinal Care Episodic Care
Primary Care Specialty Care Hospital Care
Access to care
Patient portal/physician portal Access program
Extended hours/same day appointments Reduced low acuity
admissions
Expand virtual visit options
Design of care
Defined process standards in priority conditions
(multidisciplinary teams)
High risk care
management
Shared decision
making
Re-admissions
Hospital Acquired
Conditions
100% preventive
services
Appropriateness Hand-off and
continuity programs
Chronic condition management
EHR with decision support and order entry
Measurement
Incentive programs
Variance reporting/performance dashboards
Quality metrics: clinical outcomes, satisfaction
Costs/population Costs/episode
Milford, CE, Ferris TG (2012 Aug). A modified “golden rule” for health care organizations. Mayo Clin Proc. 87(8):717-720.

53. PrOE – Procedure Decision Support
53
Carotid
Endarterectomy
Carotid
Stent

54. Mr. M’s story, continued
 2 years later, pain worsened and night time
pain came back
 Went back to surgeon and had replacement
surgery
 Good relief of pain, good function, no regrets

55. Summary
 Well-tested decision quality survey instruments
exist for common topics
 Download from
(www.massgeneral.org/decisionsciences/ )
 Provide accountability that we have reached
right patient, right treatment, right time